PROMISE IDD

PROMISE IDD study thumbnail
PROMISE IDD Research Study Logo by artist Kathleen Coogan kathleendesigns.org

 

What is PROMISE IDD?

Policies for Reproductive Outcomes in Medicaid–Improving Services for Enrollees with Intellectual and Developmental Disabilities (PROMISE IDD) is a research study being conducted by Eric Rubenstein, PhD ScM at the Boston University School of Public Health. It is funded by the Eunice Kennedy Shriver National Institute of Child Health and Human Development.  

We want to improve the experience of people with intellectual and developmental disabilities during pregnancy. To do this, we will conduct a research study using national data and perform interviews with people with intellectual and developmental disabilities who used Medicaid during pregnancy. 

Our goal is to use national data to identify optimal practices and policies that reduce maternal morbidity in Medicaid enrolled women with intellectual and developmental disabilities. We propose to use data of Medicaid covered pregnancies to women with intellectual and developmental disabilities (N>72,000) from 2011-2022 to identify impacts of pre-pregnancy Medicaid enrollment, prenatal care adequacy, and HCBS waiver receipt on gestational diabetes, preterm birth, and re-hospitalization in women with intellectual and developmental disabilities. Our aims are to:

1) Describe pre-pregnancy Medicaid enrollment in women with intellectual and developmental disabilities and examine if pre-pregnancy enrollment is associated with reduction in preterm birth, gestational diabetes, and post-partum hospitalization;

2) Describe timing and adequacy of prenatal care in women with IDD and examine if adequacy of prenatal care is associated with reduction in preterm birth, gestational diabetes, and postpartum hospitalization;

3) Describe patterns in Home and Community Based Services receipt and type of services used in pregnant women with intellectual and developmental disabilities and examine if Home and Community Based Service receipt and type are associated with prenatal care adequacy and post-partum hospitalization;

Study Recruitment

We want to hear about your pregnancy experience for our research study.

We are looking for people with intellectual and developmental disabilities to participate in an hour-long online interview about their experiences during pregnancy. Participants will receive a $50 Visa reward gift card for their time.

You may be eligible if you:

  • Speak English
  • Have a documented IDD diagnosis
  • Are currently pregnant
  • Were pregnant in the last 10 years
  • Used Medicaid during pregnancy
  • Lived in the United States during pregnancy
  • Are 18 years of age or older

Examples of IDD diagnosis can include various conditions, such as:

  • Non-intellectual disability conditions, like autism or cerebral palsy
  • Fragile X syndrome
  • Language or learning disorders